Saturday, February 10, 2007

Yet Another Update, and Hope on the Horizon

It's been a very rough winter.

In the past four months, I've had: ovarian cysts, kidney stones, chicken pox (for the FOURTH time), bronchitis, banged-up ribs and walking pneumonia. And now? The lingering cough has caused the neuralgia to act up with a vengeance.

Come on, spring! I need a break.

The past few months, my life has just been on HOLD while I deal with all of this stuff. I've had to reschedule appointments, put off meeting with friends, and let's not even get into what my house looks like right about now.

How do people who live in that level of sickness constantly get anything done? I'm living in fear that this is just a taste of things to come. Has the MS worsened? Why I am suddenly sick all of the time? Is it just a run of bad luck?

The worst part of it, is how run-down I am. I feel so very weak, and overcome with fatigue. I feel as if my body is a giant washcloth that has been wrung out one time too many. I am hoping and praying that this run of bad luck is over, because I am not sure how much more I can take.

On the positive side, I spoke with a doctor a few weeks ago (after the busted-up ribs but before the pneumonia), and it was a pleasant and productive conversation. He is an attending, who I will be referring to from now on as "Dr. Bedside Manner." He is called thus, because he has the BEST bedside manner of any doctor, outside of my kids' pediatrician, that I have ever come across.

Anyhoo, Dr. Bedside Manner oversees Dr. Youngblood (thus called because he is so young, he's practically a fetus...I feel like I'm being treated by Doogie Howser sometimes), the resident who is currently in charge of my overall care. Dr. Youngblood is not often in the office, as he is still a resident and must needs do a shitload of things in a myriad of places if he ever wishes to become a full-fledged doctor. When Dr. Youngblood is not around, I see Dr. Bedside Manner. I like both of these physicians, but of the two, I am more comfortable around Dr. Bedside Manner. Is it wrong of me to feel better with an older doctor? Who knows. I just do. I also recognize how important it is for the up-and-coming physician to have experience treating patients with MS and chronic pain...so I'm not 86'ing Youngblood.

Getting back to the point...Dr. Bedside Manner told me that he felt my trigeminal neuralgia had gotten to the point where treating it with the Oxycodone regimen plus the occassional extra Oxycodone for breakthrough pain was not realistic anymore. And as I've been ruled out as a candidate for surgery, we must look elsewhere for relief. In his words, "It may be time to switch to a long-lasting medication." A long-lasting medication would cause a level to build up in my system, thus keeping most of the pain at bay. I would still need Oxycodone for the breakthrough pain, but the hope is that such pain would be rare rather than routine.

For the first time since I was ruled out as a surgical candidate...I felt some hope.

Apparently, there are two options for said long-lasting medication, and both come with their own set of side-effects and issues. The first is MS Contin, more readily recognized as Morphine. The problems with Morphine are worsening of fatigue, constipation, concentration and memory difficulties, nausea, and other issues that always come along with a purely narcotic treatment. The biggest issue is, that if I go to Morphine now, if the neuralgia worsens in years to come...I will be close to out of options for narcotic pain relief. There's always Fentanyl, of course...but that would nearly incapacitate me. The problem is, of course, one of tolerance. And as I am likely to need pain meds in the future, I have always been very careful about keeping my tolerance as low as possible. I spent six years on Vicoden, wary of making the step up to Oxycodone too soon. I had to be persuaded to make that step. So I am, again, wary. Morphine is a big step up. I'm also not sure I want to deal with MORE fatigue and nausea than I already do.

That leaves me with the second choice, one I never considered before because I didn't know it was an option: Methadone. Yes, I said Methadone.

Now I, like most people, thought of Methadone in relation to heroin addiction treatment. The image in my head is one of a junkie at a clinic, sipping Methadone from a paper cup with a straw. Never in a million years did I think Methadone would ever be a drug I myself would be considering trying.

But, as Dr. Bedside Manner was quick to point out, Methadone is not only used for narcotic addiction. It's also used, and quite effectively, to treat chronic pain. And it does so, without the side-effects associated with narcotic treatments. It builds up in your system, and only requires the occassional narcotic medication for breakthrough pain. It takes about ten days to build up a level in your blood, and has to be monitored carefully. It would not effect my pain-medication tolerance. With Methadone, I would continue to use Oxycodone for breakthrough pain until such time as my narcotic tolerance and pain level force me to go to the next step up. I could continue on with the slow building-up of my tolerance that I have carefully maintained all these years.

Now, it's not without its side-effects. Constipation is very severe with Methadone, apparently. I've dealth with that particular symptom for years now, but I am told it's a whole different ball game with Methadone. Also, the risk of overdose is something that must be considered. Taking too much Methadone, even just one extra dose too much, can lead to serious health problems and even death. It means I would have to be very careful. There's also the stigma surrounding Methadone to be dealt with. Chances are, the first thing most people are going to think---including pharmacists and ER personnel---is that I'm being treated for heroin addiction. This could cause problems, should I need an ER or hospital treatment for pain. Such workers could be reluctant to give narcotics to someone who might be an addict. I have a hard enough time, far too often, getting pain relief from hospitals as it is. I would have to have a doctor's statement in my pain management contract specifically detailing why I am taking Methadone and that I can in fact have narcotic treatment. I've also been told that many pharmacies do not carry Methadone, because of problems with junkies and so on. So it might be a bit of an issue to even get the prescription filled. There's also the pain-in-the-ass factor to be considered: the fact that I would have to defend my use of Methadone to pretty much anyone who found out I was taking it.

So I did some research on my two options. I looked through the PDR, checked online sources, really thought about what it is I want to do.

And despite all its problems...I am leaning towards the Methadone.

I like what I am reading about it. With MS Contin, I could easily find myself in the same boat I'm in right now in just a few months or years. Morphine would work as just another band-aid for the pain...a more powerful band-aid, sure. But a band-aid none the less. With Methadone, I have a chance of treating this non-narcotically. The side-effects I deal with all the time from narcotics would be gone. The fear of running out of pain meds, practically vanished. I would have a chance of really PREVENTING pain rather than just treating it once it happens. And with trigeminal neuralgia, once the pain begins, it snowballs. With every minute that goes by, it becomes harder and harder to get ahead of the pain and have any hope of getting rid of it. This is bad news, when you consider that it takes about 20-30 minutes, on the average, for a pain pill to kick in. There's always the injectable method, but as long-time readers of my blog know all too well, that usually requires the ER and often becomes a bigger nightmare than the pain itself. Now, my pain has been lessened since I began the Oxycodone regimen (this means taking one pill every single day, whether I need it or not, to build up a level in the blood), which leads me to believe that I am the kind of person who responds to that sort of treatment. The problem is, the Oxycodone doesn't work well enough...on its own. There does exist the possibility that with the Methodone, the two could work well enough that I might have some semblance of freedom from pain.

And so, I have decided to take the chance. I am trying not to get my hopes up too high, like I did with the surgery. Oh, when they told me I couldn't have it! I was devastated. I don't want that to happen again. There is always the possibility that Methadone won't work for me, or that the side-effects will negate any positive aspects of the treatment. So I am trying to be realistic. I have made up a list of questions to ask my doctor about Methadone treatment, and made an appointment in March to re-write my pain management contract (it's that time of year again) and to discuss Methadone treatment and see if it's right for me.

Some of the questions I have:


My 2 biggest side-effects from Oxycodone are fatigue and nausea. Will Methadone increase either?

If the constipation associated with Methadone is more severe than I am used to, do I need to change my current constipation treatment? At this time, I take 2-3 stool softeners (docusate sodium and senna concentrate) every 2-3 days as needed. Will I need a more steady regimen, or a different medication? What do you recommend?

I have read that many pharmacies do not fill prescriptions for Methadone. Are you aware of which pharmacies in Portland do carry Methadone?

Currently, I am required to call in to the prescription coordinator every month to get a paper prescription for my Oxycodone, which I must then pick up at the office. Is the same required of Methadone?

The PDR lists “dizziness” as a side-effect of Methadone. I currently am experiencing a stronger-than-usual amount of MS-related vertigo. Will Methadone effect this?

I understand that overdose is a considerable concern with Methadone treatment. What steps can I take to protect myself?

Methadone treatment requires opiods for breakthrough pain. How many Oxycodone will I receive a month for this?

I understand that Methadone takes an average of ten days to create an appropriate level in the bloodstream. Are there are any symptoms or side-effects I need to be aware of during this period?

Do I need to make emergency personnel aware of my Methadone treatments?

How many times per day do I need to take Methadone? If I miss a dose, what should I do?

Is there any particular time of day that is better to take Methadone? Do I need to take it on a full or empty stomach?

How long should I be monitored before we are reasonably certain that the Methadone treatments are working? What can I do to assist?

During the ten-day adjustment period, should I continue or discontinue my current Oxycodone regimen (one pill per day)?


I am looking forward to the appointment. Despite my desire to remain realistic, and not get my hopes up, I do indeed feel very hopeful. I also wonder why no one has brought this to my attention before. Were they waiting to see if I was a surgical candidate? I was ruled out over a year ago. Were they waiting to see if an Oxycodone regimen worked for me? I don't know, but I intend to find out.

I will keep everyone posted. As usual, prayers and good thoughts are always welcome...

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7 Comments:

At 11:32 PM, Blogger Angel said...

I know of an online friend with Chiari malformation, had 2 brain surgeries and was left with severe pain. She said that methadone was really a miracle med for her.

I say, you do what is best for you, get the paperwork to CYA for doctors, and screw the people who don't understand why you need the med.

I hope and pray this works for you!

 
At 12:49 AM, Blogger Camiller8302 said...

Currently I am on the methadone program. I use it for different reasons than what you intend but if it's not to late I can answer any questions you have about methadone side effects(trust me for some the side affects can be a little scary at first, but others maybe not) Constapation(I recommend a high dose of the powder fiber you can mix in food and drinks, and a stool softener I take philips). If you have any questions feel free to let me know at my addy Camiller8302@yahoo.com

 
At 11:31 AM, Anonymous Anonymous said...

Oxycodone is twice stronger than Morphine so I don't understand why you would switch from oxy to morphine... it's usually the other way round!

 
At 10:14 AM, Anonymous Murray Federer said...

Any chronic disease can be dangerous if not treated on time this indicates findrxonline in their articles, in many cases the drugs are of great help to counteract the chronic pain, but there are other supplements that science should be regarded as vegetables and vitamin supplements, many consider the medicines are of great help to counteract the pain, especially opioids narcotics such as Vicodin, Lortab, Hydrocodone, oxycontin, oxycodone, tramadol, and many others that exist in today's market, but I think we should also consider as an additional alternative to supplement the vitamins such as calcium, B complex, vitamin C, do you think it is a contribution to people with chronic disease?

 
At 11:10 AM, Anonymous Anonymous said...

Does anyone want to mention the severe(dangerous) withdrawls that are assosciated with methadone!? It rook me thrre months to feel semi-normal,after taking 85mgs of Methadone for two years...........

 
At 3:26 AM, Anonymous Sydney Physio Newtown said...

It's a great correlation that Dr Bedside Manner also gave you HOPE.

Sounds like a gifted healer.

 
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